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Saturday, February 27, 2010

Treatments - A Long List

If at first you don't succeed, try, try again. Then quit. There's no point in being a damn fool about it. -- W.C. Fields

I
had to laugh a bit when I first heard this quote. Thinking back on
all the hundreds of treatments I have tried and often continuously
repeated despite their ineffectiveness (and, at times,
counter-effectiveness), I sometimes have to wonder about myself. What
was I thinking?

But there is such a desperation and
overwhelming desire to get well that one will often try anything (and
keep at anything) in the undying hope of it suddenly working.

After
I became bedbound, I received a variety of nutritional IV's at home
twice weekly (sometimes daily) for about 4 years.... despite the fact
that they often made me feel worse. My doctor at the time (she is
no longer my doctor) told me that the ill effects were a result of
detoxification, and that I had to suffer through it in order to get
well. The biggest mistake patients made, she told me, was giving up
too early. I wanted to believe her so badly that I continued with
the treatments for years, hoping that, contrary to the evidence and my
own intuition, I was doing something which ultimately would benefit
me. In truth, I was also a bit limited in my choice of doctors. I
could find no other MD at the time to come to my house to see me and
thus felt I had little alternative but to listen to this doctor's
orders.

In the end, it turned out I should have
listened to my intuition. My reaction to the IV's was not detox; it
was my body's inability to tolerate the treatments. After watching a lecture by Dr. Paul Cheney,
a renowned ME/CFS expert, I learned that high dose vitamin C and
glutathione IVs can actually have a detrimental physiological effect
in some patients with ME/CFS. Not surprised by these findings, and
upon further research, I finally stopped the IVs.

The
pathology of ME/CFS is complicated and every patient reacts
differently to different therapies. I obviously don't want to deter
anyone who may be receiving a similar treatment and responding well to
it. I just wanted to make the point that I am not one to give up on
something very easily.

Though I'm doubtful to ever go
down such a road again, I always give any treatment a full-fledged
try, often for at least a year or longer. As with anything in life,
I've consistently wanted to make sure I gave it my all.

I've
received a lot of emails asking me if I've tried a variety of
therapies for ME/CFS, and I've therefore decided to do a quick run
down of some of the many things I have indeed attempted in my hopes
to get well. Please note that this is a very incomplete list and is
meant only as a general summary. I have been sick for over 13 years,
and to list all the things I've tried in that time would be too
enormous a task. So this is just a little overview. Exciting reading, I
know, but here goes ... :)

Nutritional Therapies
As
noted above, I received a multitude of nutritional IV’s twice weekly
(sometimes daily) over several years. Almost all of them made me
worse. I’ve also tried a growing list of nutritional supplements that
likely exceeds well over 300 items. These include but are not limited
to vitamins, minerals, enzymes, amino acids, antioxidants, herbs,
probiotics, energy/nutritional/green drinks, Gookinaid, juicing, whey
protein, transfer factor, colloidal silver, cell food, chlorella,
mitochondrial supplements, mushrooms, immune enhancers/modulators, NT
factor, adrenal glandulars and the like, NADH, D-Ribose, and so on.

Protocols
There
are several different ME/CFS and Lyme treatment protocols out there,
based on a variety of different theories, or on different aspects of
this complicated and multi-systemic disease. Some of the protocols I
have attempted include the Yasko protocol, the simplified
methylation protocol, the Patricia Kane protocol, the Dr. Zhang
protocol, Dr. Gupta's protocol (amygdala retraining), the Myhill
protocol (less a sauna), Dr. Martin Pall’s protocol, Cheney’s
protocol (prior to his recent change to CSF’s and stem cell
replacement), KPU protocol, and several other protocols I’m sure I am
forgetting.

Regarding the Marshall Protocol, I had
the proper testing done and it was determined (via a conversation
between my doctor and Dr. Marshall himself) that I would not be a
good candidate.

Doctors I've Seen
As
for the various types of doctors I've seen over the years, they
include about 5 internists, 3 infectious disease MD's, a neurologist, a
rheumatologist, an endocrinologist, 2 dermatologists (for hair
loss), an allergist, several naturopaths, a world renowned
integrative medicine MD, 3 acupuncturists, 2 herbalists, 2
nutritionists, a psychotherapist specializing in chronic illness, a
cognitive behaviorist, and multiple alternative health practitioners.

Whew!
So, there you have my partial list. Though few of the treatments
have really helped me, I suddenly feel like I've been very busy all
these years. :)

As for my current regimen, it
includes a healthy diet, meditation, an antiviral, medications to
help with sleep, natural thyroid, Equilibrant, Hydroxy B12 shots, the
KPU protocol, light stretching in bed, and about 20 different
supplements. I am also attempting LDN (low dose Naltrexone) and a
nutritional immune modulating powder called Avemar.

Here's
hoping that new and better treatments are around the corner for us
all. If nothing else, there's no doubt we will all still continue to
try, try again...

36 comments:

Wow, Laurel. I never thought I'd find a person with a list that's longer than mine, but yours is. You say you suddenly feel as if you've been very busy these last few years. I know just what you mean. I like to say that sometimes having CFS can feel like a full-time job. Of course, it's a full-time job that drains us of money as opposed to bringing it in. I have good health insurance, but as I read your list, most of the treatments that I've also tried were not covered by that insurance.

But I continue to try. Right now I'm getting intensive acupuncture treatments (three times a week) and taking Chinese herbs. And, no, my insurance isn't covering it. I can't tell if it's helping but, as with your IV treatment, I keep getting told that the biggest mistake people make is stopping too early. I go back and forth on whether to continue -- as I said -- it feels like a full-time job.

Funny, I've heard the "feel worse before feeling better" about detoxing from a couple of other sources. In the experience of those sources, it worked out and they really did feel better eventually.

I guess the question to ask the person administering treatment is, how can you tell the difference between worse-before-better and plain old worse? And if you can't tell the difference, how long should you wait to feel better before you conclude that it's not working for you?

Toni -- it really is a full time job! Like you, much of the treatments I've tried are not covered by insurance. I've used up all my savings on various remedies through the years. It's really hard to give up on a treatment because I think we have so much hope in it each and every time.

Cinderkeys -- That is a great question, and I actually asked it of my doctor many, many times over several years. In this particular case, I think the doctor was more interested in my money than on how I was responding to the treatment... but that's a whole other story. :) I do think it's important for patients to ask that question though, and to do as much research on various treatments as they can. Certain tests (like heavy metal testing and other markers) can also help to indicate whether you are detoxing or just not responding well.

Wow! It really looks like you've tried everything! Thanks for taking the time/energy to share.

I can't remember if I've commented before, but I just wanted to say hi, and that I've read your whole blog and it was really great for me to hear your story. (Even though it isn't a great story) I've had CFS for about 10 years and I also got it when I was young, 15, and I just turned 26.

I kept nodding my head as I read this post (and I hope you don't mind I created a link to this post on my blog). I can't believe that you've tried more protocols and treatments than me and STILL seem to remain hopeful and positive. Due to the cost and my cynism I no longer try much. When people suggest stuff like posible cures to me I nod politely and tune them out...I just try to eat healthy, rest frequently (pace), as well as continuing with a few vitamins/supplements (one's that don't cost too much)

Coming from a Lyme Disease perspective, I was interested in the antibiotics you tried.

Erythromycin was one that was not considered effective for Lyme treatment, it did very little for me when GP tried me on it because she felt Clarythromycin which I was on with Amoxycillin was a bit expensive. LLMD said I would need twice the dose of Erythromycin to work and my stomach would not tolerate such a high dose.

Penycillin is also another antibiotic not found very effective on Lyme.

Doxy the gold standard, really did nothing for my arthritis and muscle weakness although when I went back onto Amoxycillin I realised that doxy had helped with other things like bladder weakness, sinus problems, chest tightness air hunger and pain in the gall bladder area.When GP added clarythromycin into the mix with Amoxycillin the improvements were even more significant including the constant pain in the top of my head which I believe was nerve pain.

I think with Lyme we all have so many symptoms and all react so differently to different antibiotics.

Certainly in my case it was very much trial and error with GP and LLMD guiding.

I was lucky I did not have chronic fatigue in the sense of taking days to get over it, I just had fatigue, arthritis pain and muscle weakness.

One day I hope you find something that helps relieve your symptoms too.

I've been following your blog for a while but not managed to comment before. It's a great blog! I'm in a similar situation to you - have severe ME/CFS and am bedbound. I'm in my 30s and been ill since I was 15, and my health gradually worsened over the years, despite so much effort to get well.

Seeing your list here reminds me of all the things i've tried too. I was made much worse by nutritional IVs and antifungal/anti-parasitic drugs. I've also tried many, many other things with no clear benefit. I don't want to be discouraging to anyone out there, but it's kind of a relief to know there are others who have tried so many strategies without great success. . I say this because I got into feeling that I wasn't recovering because maybe I hadn't found the right treatment yet, or perhaps even that there was an implication that I wasn't searching hard enough for the elusive cure. In the end, the quest for answers tied me up in knots emotionally (still does sometimes) and drained me of energy, and a huge amount of money. I'm now at the stage where my options are much limited by being unable to travel to see doctors and therapists, I've pretty much run out of money, and I'm much more cautious because I can't afford to lose any more functioning.

I do still believe that improvement and recovery are possible, but I think it's important to acknowledge that there are no easy answers, and that although each of the treatments you listed might work for some people, there are just as many people who don't have success with any of them.

We need more decent biomedical research into this illness so that one day there will be better medical understanding and safe, effective treatment for us all.

I'm ever hopeful for the ability of my body to heal through self-care, and for new research breakthroughs, but increasingly cautious about the peddlars of some of these treatments and protocols!

Thanks for writing this post. I do hope you start to come out of your recent crash. I'm thinking of you.

One day, when they've found out what the cause is and have developed some treatment, they will look back at your list and regard it with the same horror that we have about blood letting and cupping. Well, maybe that's a bit extreme, but you know what I'm saying.

hi, wow.. a lot of treatments! thanks for all your information. it's good to hear your story.i've had cfs 15 yrs but not bedridden, able to manage working very part time and raised 2 kids but it's been a struggle all the way. tried many things but not as many as you.i'm in austalia. recently did test for gut bacteria and had very high chlostridia and low ecoli. treated with antibiotics, probiotics etc. at the time i felt great. slipped back into fatigue but this was the best thing i've tried and am going to repeat. have you tried this?also dhea, natural thyroid have definitely helped.for me i think accepting that i have the illness, learning to manage it, having supportive family & friends, not worrying about what other people think and staying positive (not always easy) is important.best wishes!cheryl

just watched your testimony on you tube. it's beautifully done and very touching! i can imagine what you're going through cause i feel like you some of the time but i can't imagine being house bound all the time. i'm so sorry that you're so unwell. great to hear you have a lovely partner to understand.

Thanks, everyone. I don't think I even realized how long my list was until I started writing it out! And the sad thing is, there are at least 200 more things (in terms of supplements) I could add. :) It is good to know I'm not the only one, though sad to know it as well. It's really unfortunate how few effective treatments are out there.

Joanne, the Erythromycin wasn't actually for Lyme. They gave me that when I first got mono because I had a really bad cough and they thought I might also have bronchitis (I didn't). I ended up having an allergic reaction to it and had to go to the ER. Good times. :) I was on Doxy for a year or more for the Lyme (as well as Zithro and the IM Rocephin/Penicillin and Dr. Zhang protocol). The Doxy often made me vomit but I kept taking it anyway b/c I wanted so badly for it to work. Again, what was I thinking? ;)

Cheryl, I had that same gut bacteria test done and was on Cipro and a probiotic (VSL; Dr. DeMeirleir's Protocol) for a year as well. Regretfully, I did not see any changes from it.

Jo -- you are probably right about looking back on all those treatments in disbelief once the cause and targeted treatment is found! Thanks for your kind words.

Amy, Alison and UpNorth... thanks for all the thoughtful comments. It's so nice to hear from new people! And Cheryl, thanks for the comment on my video. :)

I should add that even though my list of attempted treatments were not effective for me, that doesn't mean they won't be effective for someone else. As I said in my post, everyone is different. I don't want to discourage anyone! :-)

This is amazing...you have really spent an enormous amount of time and money on treatments. You have a lot of determination and courage. I have to tell you I laughed and laughed at your W.C. Fields quote! It was just the right "medicine" for me last night.God bless.

great post. I had intended to write one like this myself as so many people keep writing me about protocols I should try. I've "only" been ill for 2,5 years but have tried so much already. When I am out of my current crash I will list all the things I've tried so far, too.

Seeing them listed probably will make me say the same: What was I thinking?

But doing something, trying anything, is so much easier than doing nothing, isn't it?

All the best to you Laurel, will reply to your FB message as soon as I can!

Thanks, Rebecca! You are a survivor as well! I think the answers are finally going to start arriving soon, too.

Annie, sorry to hear you are in a similar boat. As Rebecca said, with a new research center geared towards ME/CFS research (the WPI), I think there is a lot of reason to hope right now. Thanks for adding me to your blog roll!

Actually, your comment made me curious, and upon some research, it turns out that (from Wikipedia) "...studies indicate that approximately 80-90% of patients with acute Epstein Barr virus infection treated with such antibiotics [includingErythromycin] develop a, red, diffuse rash." I never knew that! I wonder if my doctor was aware of that at the time, and if so, why she put me on antibiotics knowing I had mono. :)

Laurel- I have just read your first ever blog post. It made me very sad for you and, quite honsetly, scared for me.

As someone who is new to this, I have enough questions to fill dozens of comments pages but will restrain myself to just one: You say in your post "anti-anxiety/anti-depressants (purely to appease doctors; too many to name." Does this mean that you would advise me against taking any form of anti-depressant as treatment for ME/CFS? My doctor suggested to me on Friday that I may have ME/CFS and gave me enough sleeping tablets for two weeks and said that when I have my next appointment - in two weeks - we would discuss the possibility of taking anti-depressants as the first line of treatment. I feel neither stressed nor depressed, but pissed off that I haven't got the energy to do things that I could do four weeks ago with no problems. Help!

Hi, Chris. Thanks for visiting my blog! I'm sorry to hear you have just been diagnosed. Please don't let my story scare you! :) I am on the extreme end of the spectrum, and the majority of those with this illness are not as debilitated as I am. Also, much more is understood about the illness now than 13 years ago when I first got sick. My best advice to you would be to simply listen to your body and don't push yourself to the extreme like I did.

There are a lot of helpful sites out there that could help you best determine what avenue for treatment you may want to explore along with your doctor. There are a lot of support groups as well where you can interact with people who can relate and offer advice. One such site is the Phoenix Rising Forums, which you can find at:http://forums.aboutmecfs.org/forum.php

Regarding anti-anxiety and antidepressants -- I would not necessarily advise against trying them. In fact, I still take very low dose Elavil and Klonopin to help with sleep. When I said I took too many of these drugs to name, I meant that doctors uneducated in CFS put me on regular/high doses in the hopes that I was just depressed and not really sick. I took them because I felt like I needed to at the time in order for them to feel satisfied that they could rule out depression as a contributing factor.

Low dose Elavil and Klonopin are often used in CFS to help with the sleep disturbances that can come with the illness, rather than as an antidepressant or anti-anxiety medication.

And of course, some people with CFS do experience secondary depression, as with any other serious, debilitating illness. In those cases, antidepressants could be appropriate.

So, I wouldn't rule it out. I'd look into it and check out what it is your doctor wants you to take and whether it is something you feel comfortable with. I'd also make sure you have a good, CFS-aware MD who can help you find ways to alleviate some of your symptoms.

There's a lot of hope on the horizon, and I really think better treatments are on the way.

Thanks FG! My list would be the basics... fiance, family, friends, a good book, yummy food, clean hair, laughter, etc. I've had to learn to appreciate the small things in my life; though, when you think about it, those are really the big things anyway.

You have been one busy lady. I think that even beats the long list I've gone through in 23 years, although I've gotten benefits from about 1/2 of the things I've tried. Still, all it takes is adrenaline to relapse, sigh.

I do believe something else will come. Maybe stem cells. Let's hope you're out of bed in a few years. In the meantime, I enjoyed the pictures of life outside your bedroom window.

Laurel, I'm a healer based in the UK who has CFS (but luckily the healing has stopped me from being bed-ridden despite my over-exertion in other areas). Anyway, do you mind if I send you some distant healing for free. I use energy to work directly on causes so I will try to work on the viruses that cause your condition. Even if it does nothing for you, it might be worth me trying to help.

Hi Laurel, I am not a blogger, so I was looking for an email to send to you for encouragement... or at least to say you are not alone. I have been suffering for 12 years now with extreme head pain, chemical and food sensitivities, and no diagnosis (all day every day non stop). Nothing helps, and most everything makes it worse. People do not understand how this is possible, and then jump to the conclusion it is just psycho. After describing my diet to someone, he told me to go out and get a cheeseburger (more than once). I just started trying Glutatione pushes and ALA IV... the Glut may have helped some things, but not the pain (maybe worse), the ALA made the pain worse. So I am not sure what to do, I too question the detox theory, cause, most often it is a reaction... not like a hangover. I am in awe really of this website, it seems so well orgainized. Good job. Please continue. I am sure your are appreciative, but please continue to feel blessed to have someone in your life. Here is pretty much on my own. This is huge. I have had no choice but to work through it cause I have no proof of the disability so there is little chance of ST LT disability (to try would only be stressful to a point of another set back - more pain). I can not longer continue, so now I am about to lose my job. I have spent many 10s of thousands on this with no help. With no spouse, no ST LT disability, no support, I can only see financial ruin ahead. When it comes to losing this house,... I am scared and do not know what to do.

Thanks for visiting my blog and for your comments and compliments, aa. Sounds like you've been through a lot as well. I know how hard it is... please hang in there! Some people do see improvements over time, so there is hope. You are in my thoughts.

Thank you for your blog and videos I have used both on my website www.findacureclub.weebly.com I hope that is okay? I was just following some of your Blog Links and found some unusual pages. I have some of the same links and from my end they work. From your page CFS Central is not working, along with some others. They end in pages filled with text only without formatting. Sorry to post as a comment .. I just cant find the message me tag. I hope this day is cosy and happy. Warm Thoughts. Lesley aka Sleepy Sunshine X

Laurel - what an inspiration you are! Your 2009 video was so moving to me! The loss of your voice sounds similar to what a friend of mine experienced with Cricoarytenoid Arthritis - a form of Rheumatoid Arthritis of the voicebox. She was mute for a long time. Eventually she was diagnosed and was able to regain her voince (most of the time) with the use of Biologic medications (Humera / Enbrel etc.). I hope that one day the doctors can figure out how to improve your life and all those who are afflicted with ME.

i came down with CFS/ME after a severe respiratory virus in January 2013. Actually I diagnosed myself very quickly after a month or so but of course had to do all the exclusions from other illnesses in the medical institutions. Finally the Charité in Berlin diagnosed CFS/ME I started reading blogs of people having CFS/ME to see how they deal with this awful illness and what they do hand have done to get better.

You have done pretty much and i think i am on my way to do the same though i have to say that it is not easy in Germany to get any help. The few "experts" here are all working privat and have to be paid by myself.

I read a lot about LDN - Low Dose Naltrexone and consider to try it. I would like to ask you about your experience with LDN. I do not have any pain while resting. My most debilitating symptoms are post exertional malaise and orthostatic intolerance. That`s why I have to lay down so much. Mostly half of a day ore sometimes more.

I read that LDN is effective for pain release especially if you have fibromyalgie. May be you can tell me what LDN has done to you.

I think I will never see the world as I have seen it before. And it frightens me how vulnerable the human body is.

Dear Laural all the best to you and hope - so much hope - from Germany!!!!